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Moni Living With It married 11 yrs, no kids I am disabled,going blind and deaf, and I use to work as a grill cook... Send Message Subscribe: Moni

Thursday, October 16, 2008
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I have never had migraines before until my normal headaches started getting sooo worse that tylenol could not get rid of them. I would extra-strength before i would to work and then an hour later 2 more. I would there but i could have taken 2 more as i still had the migraine and not...

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Untitled Comment
Nancy Harris Bonk
Saturday, October 18, 2008 at 11:10 AM

Hello, and welcome to MyMigraineConnection.com!

You certainly have a lot going on right now. I'm really sorry to hear about your vision issues, that has to be very scary. Let's see if I can give you some information that may be able to help, ok?

It sounds like it is time to see an expert who treats Migraines and headache disorders, rather than a neurologist, and this would be a Migraine specialist. Some neurologists may say they are "headache specialists" but really are not true experts. Neurologists treat so many different conditions (like MS, stroke, epilpesy) it is hard for them to be experts in any one area. Migraine experts go to scientific conferences to learn about the new advances in Migraine and headaches, take continuing education courses in this area and devote their entire practice treating patients with Migraines and headaches. You might want to think of it this way: when a pipe under your kitchen sink breaks you call a plumber - the expert - to repair it. You could call a handy man or carpenter to fix it, then he could fix the cabinet door, or paint the trim or whatever else needs to be done. For more information, continue reading: Migraine and Headache - What's So Special? Then after you read that, you can find a Migraine specialist on our Patient Recommended Specialist List.

One problem we can create, quite by accident, is Medication Overuse Headache (MOH) and may happen if we take certain OTC and prescription medications more than two-three days a week. I know it doesn't seem right - all we want is the pain to go away. But if we have MOH, any Migraine preventive medication we take will not work, period.  For more information, read on: Medication Overuse Headache - When the Rememdy Backfires.

You mentioned you have a hearing problem. May I ask if you have any ringing or whooshing in your ears? Head pain that doesn't respond to treatment, vision issues and a host of other symptoms may be part of a condition called Idiopathic Intracranial Hypertension - IIH, formerly called Pseudotumor Cerebri -PTC. When I saw you mentioned a shunt, I wondered if anyone ever discussed this condition with you. We have information on this condition HERE.  After you read any of this and have any questions, please feel free to let me know, ok?

Thank you for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.

We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.

Along with your personal "My Home" page and the discussion forum, you'll find links to a great deal of helpful information and a spot to sign up for our free newsletter on the main page of our site, http://www.MyMigraineConnection.com.

If you have any questions, please feel free to post them to the forum or send me a message through my profile.

Welcome again,

Nancy Bonk
MyMigraineConnection.com Expert

re: Untitled Comment
Moni
Monday, October 20, 2008 at 10:59 PM

I do have ringing of my ears but that has been with me for as long as i can remember. the loss of hearing is a different issue also. I do have PTC as you call it or the pseudotumor cerebrei. the drs where this was put in told my vision will finish going blind later but could not tell me when as the VP shunt was keeping it right now from doing it. it drains all the spinal fluid into my stomache right now which is always upset and I now have acid reflux also.

re: re: Untitled Comment
Nancy Harris Bonk
Monday, October 20, 2008 at 11:17 PM

Hi Moni,

Do you see a Migraine specialist for the PTC? When I had my last LP I felt much better but they did mention the "shunt" word and I said no thank you at that point. So far so good.

The shunt doesn't sound like it is doing anything for your PTC or head pain? When was your last LP? There is a good site for PTC information -Intracranial Hypertension Research Foundation

Let me know if I can help you any further. Have you checked out the discussion forum yet?

re: re: re: Untitled Comment
Moni
Sunday, October 26, 2008 at 11:27 PM

I do not know what you mean by LP?? I had an LP Shunt before the VP shunt and 2 revisions of the LP SHunt which did not work, so that is why I got the VP Shunt. as for checking my VP SHUNT no one checks it but my neurologist that I go to as the cleveland clinic who did the VP Shunt closed the case. Now because of my medicare that I am on I cannot go to cleveland clinic anymore. it is not under the plan. University hospital is though. The dr. who keeps a check on it will do an mri so he can see if everything is allright inside. that is all. he does that once a year or so. otherwise no drs doesn't bother with my shunt. most people doesn't know I have it unless i tell them and show them and then they see the bump on my head. sometimes the bump where the bulb is gets sore but i live with it as i do with my arthritis that no one has done nothing with either. my knees are killing me also.